Wrong Model, Wrong Research

I was going to write a long, detailed post directed at MIT about their announcement of a new Center for Autism Research, which will be focused on lifting the “burden” of autism and developing “methods to better detect and potentially prevent autism spectrum disorders entirely.”

I was going to talk about how, scientifically, any approach to a complex problem requires using the correct model, and explain that I think they’re using the wrong model of autism — a pathology model rather than a neurodiversity model. I was going to pull quotes from articles about this new center (as well as the existing autism research going on at MIT, which is already along the same lines) and contrast them with quotes from MIT’s president about inclusion and respect for students of all backgrounds.

But I’m just tired of it all.

I understand that our whole society pathologizes difference: there are still people who argue that darker-skinned people are genetically inferior, and people who claim that LGBT folks need to be cured. It’s no surprise that differences in brain “wiring” are also treated as defects to be eradicated — but just because it’s no surprise doesn’t mean I’m not angered by it.

Never mind that the real “burden” of autism is the burden that society places on the different — a burden that often leads to anxiety, depression, and other co-occurring mental health issues. Research to lighten that burden would be welcome. Research could also alleviate symptoms of other co-occurring physical conditions common on the autism spectrum, such as epilepsy and gastro-intestinal problems. This sort of research could do a lot to benefit autistic people directly, rather than playing into a conception of autism as an epidemic, as some sort of blight on society.

I would welcome research that would help me understand the details of my particular neurology, and that could, for example, help create strategies for managing sensory overload. Or we could have research into technologies to help autistic people who don’t communicate in standard ways — or whose sensory systems are perpetually on overload — to better have their needs met. Research like that, based on understanding the experience of autistic people, could also go a long way toward dragging the rest of society into a new understanding of both our strengths and our struggles — and maybe help create a place where we could fit in without trying to fit ourselves into the wrong mold.

The problem for MIT, I think, is that many of these are likely to be social fixes, not technological ones, and MIT is all about the technology. It’s right there in the name, you see. But some things don’t have technological fixes, they only have societal ones. We don’t, for example, try to solve white supremacist racism by genetically “fixing” all skin color to be the same shade — we recognize that the problem lies in the prejudice of others, not in the individual’s possession of dark skin.

<deep breath>

So.

None of this is likely to change the course of autism research, at MIT or elsewhere. But as an MIT alum myself, I’m disappointed that they can’t seem to see beyond the mainstream view of autism. And as an autistic person, I’m dismayed that they see something so intrinsic to me as my entire way of thinking, and of experiencing the world, as nothing but a burden on society. I haven’t felt particularly connected to my alma mater in the time since I graduated, but I surely feel more alienated from it today.

I share your frustration and disappointment. Pity MIT don’t focus on technological ways to make environments more autism friendly. Non-autistics would surely benefit from less sensory stimulation/overload and as such this would be a truly inclusive approach .

It’s sad and funny isn’t it? The society gets more and more bound to using technology in everything, and aspies still get stigmatized. As if NTs ways were the only correct ones. They are the ones that behave emotionally and irrationally, not controlling their emotions. They insist in using eye contact while talking or listening, and on many other NT behaviors that are… sorry: behaviors.
Why “research” autism when they could learn from us? Listen and learn. What does communication feel like when using their rules?

Temple Grandin was right… if they removed autism traits from the gene pool, humans would still be just smalltalking in caves and nothing would progress.

^^Hear, hear!! I love that quote. Temple Grandin rocks my world 😊 And I agree with your thoughts on the research issue as well. They could learn so much from us, so much more easily! It baffles me that they don’t simply ask! 🌺

Reblogged this on the silent wave and commented:
This is an incredibly insightful post that I think is absolutely spot-on. While I’m a self-confessed research addict, I do find it disturbing that researchers continue to approach the Asperger’s/autism spectrum from an exclusively pathological point of view, based on their own historically egocentric observations, without so much as *asking* us for any part of our perspective at any time. Thus, much of the research remains stubbornly aimed at finding causes, correlations, and cures. The first two do little to nothing to improve the lives of anyone already in existence, and the third would only be useful to a small subset of the spectrum community. NONE do anything to actually increase the enlightenment or understanding between the two neurotypes, especially of the neurotypical community, of the spectrum community (I.e., no advances have been made by the scientific community to solve the issue of Asperger’s/autistic people being continually misunderstood by the majority of the neurotypical population). This is such a slamming-awesome post 🙂 ❤